This blog is about Narcolepsy, and how it effects one's life everyday. Yes, I am the sleepy woman, but I still have adventures every now and then...and when I don't, there is plenty of things to write about in this world:)
Narcolepsy is such a mystery. Some people think that it is an autoimmune disease. Check out this article about the connection between autoimmune diseases and having gray hair before the age of 30. Did any of you peeps with Narcolepsy go gray early? Here's the link, let me know what you think, ok?
I have seen many articles lately about Narcolepsy, and it's symptoms and general information regarding this illness. One of the interesting things, to me anyway, are the differences in opinions about Narcolepsy and how it effects it's target. I have collected some opinions from various websites, and posted them below, with links, to see what you think.
Do any of these explanations seem accurate in your life? How does Narcolepsy effect you? I am so interested in the opinions of others on how Narcolepsy has changed your life. What is different since you have been effected by Narcolepsy?
Here are some snippets from various sites on the subject. The link to the actual website is included. Let me know what you think, OK?
Long Term Effects of Narcolepsy
From the website of Narcolepsy Network - Click here to go to site. ...The consequences of narcolepsy may be many and far reaching. Sleep attacks and cataplexy in public are embarrassing and can cause serious social and economic difficulties. Cataplexy may interfere with physical activities, and efforts to avoid emotions may lead to social withdrawal. Inability to work and/or drive may result in loss of independence, financial difficulties and a multitude of other problems. In these situations, a person can easily lose touch with others and become depressed... ---------- The following text excerpts taken from SleepFoundation.org - Click here for the exact page ...The symptoms of (and some of the drugs taken for) narcolepsy may affect your sex life. Sexual problems, such as low sex drive and impotency, may result from severe sleepiness, depression, medications or cataplectic attacks. These problems, especially any resulting from a new medication or changed dosage, should be discussed with your doctor....
...Narcolepsy symptoms can also result in a change or loss of employment, physical restrictions and social withdrawal. Loss of self-esteem, learning difficulties and depression can result... ---------- Below are a few words from the Aurora Health Care site, from an article intitled "In his own words: living with narcolepsy". The whole article is good. You can check it out, click here.
...I've had to make many lifestyle changes. I had to give up my military career and change jobs. I only swim in shallow water. I'm still a heavy coffee drinker, just not three pots a day. I take regular naps, generally after lunch, around 4, and after supper. I can regulate when I need a nap. And by taking naps, I don't have to take as much medication. Since emotions can trigger cataplexy, I have to walk away from confrontational situations or I may fall over... ---------- At the website of Health Central, here is what they have to say about the emotional and social effects of Narcolepsy. Click here to go to the website.
...The patient suffers emotional and social difficulties from the uncontrollable sleep episodes and cataplexy. Studies have reported rates of depression in people with narcolepsy ranging from 30 - 57%. (In the general population, prevalence of depression is 8%.) Studies have shown severe emotional and social dysfunction in all areas, including work, relationships, and leisure activities. One study reported that 25% of men with narcolepsy suffered sexual problems. Some experts believe that the psychological and social effects are more serious than those caused by epilepsy (which narcolepsy can be mistaken for).... There are many opinions about the effects of Narcolepsy on one's life. We all have our own unique experiences and opinions. How does it effect your life? What area in your life that is effected by Narcolepsy do you find the most difficult to deal with?
I am really interested in hearing different experiences, and I would like to post some of them here, with your permission. Well, everyone, have a great rest of the week, and oh yeah, have any of you seen the film "90 Naps a Day" yet? I got some interesting opinions from some of you who have seen it, and I hope to write a little about it soon. I haven't seen it yet, I am in the U.S, and I haven't found a way to see it, I have only been able to see some clips.
I have been seeing quite a few news articles related to this genetic discovery in the past week.
Scientists in Japan have identified a genetic mutation linked to narcolepsy. I wonder what this means for the future of those with this disease, and finding a cure or alternative ways of treatment. Pretty interesting stuff!
On a side note, I have been sleeping approx. 15 hrs. a pop/day, for about a week. Today, I woke up, and felt like I had energy. I forgot what that felt like. I will NEVER take any energy or "good" days for granted! Oh what a great feeling it is to feel like moving, reading, working, shoot, doing anything!!
How are all of you doing?
This puppy was at the gas station, and I had to take a pic! What a cootie bug poo!!!
These past few weeks have been filled with mayhem, craziness, and odd happenings. So many things that have happened in the world lately have been devastating. From natural disaster to tainted products in China, hurting so many people. Please, don't forget, if you are a prayer-er (highly recommended here:)) to keep all of these people in your prayers, thoughts, and actions.
While reading the news today, I came upon, yet, another strange incident, but this time, it was beautiful, and a winner!
Wow. One commenter on the story mentioned "It looks like God's smile!". It is a beautiful thing.
Thanks God! I am sure that it really helped some people today. When I take the time to look at the beauty of nature, it seems to always put things back into perspective. I am so blessed. I thank God today for his mercy, and kindness he has given me. Again, I am so blessed.
September 7, 2008
Sara Palin, Pro life my a!@!
How could someone who proclaims to be "pro-life" enjoy killing animals so much?
Check out these links. If you choose to vote in this upcoming election, make sure you are as educated as you can be about all of the candidates. We must know all that we can before we vote!
Maybe you aren't a vegetarian, but is it really necessary to have a dead bear to sit your butt on? If you had to kill it yourself, would you still do it? How could killing an animal be such a badge of honor? Sickos!!!!
Nice Bear you are sitting on Ms. Palin....real nice.
There seems to be a new film among us entitled "90 Naps a Day", a film by Firefly, exploring Narcolepsy. Click here for a link where I found this info, if you are interested.
I did a search, and cannot find any other info about this flick. Anyone know any other info about it? I would love to know more, or where I could see it.
I haven't written in a long time. I hope to be writing again, regularly now. Thanks to all of you that keep coming back and reading. I really appreciate it!!
Narcolepsy can make a person forget words, slur words, mangle words...you get the idea, right? In honor of all of my brothers and sisters in Narcolespy, I bring something new! Well, I have decided to offers my readers, (all 2 or 3 of you...LOL), a weekly game entitled,
"Who Forgot to Put on Their Thinking Pants" quote game. Here's the deal...
I will leave you a quote, and you try to guess who said it. There is one important rule however...you absolutely cannot look the quote up...No Google-ing, no web search, just your fresh brain matter, and who you think may have said the monstrosity that I post. Got it? OK. And the first person to guess the mess will get the prize. Except unfortunately, there really is no prize.
Well, there is sort of a prize. You will be listed as the winner!!!! Woooo Wooo!
So here it goes, Here is todays funky funktabulus quote; remember, no cheating!!
Who Said This:
"One reason I like to highlight reading is, reading is the beginnings of the ability to be a good student. And if you can't read, it's going to be hard to realize dreams; it's going to be hard to go to college. So when your teachers say, read—you ought to listen to her."
Do you have insurance, but still cannot afford your medicine? Do you have Narcolepsy and can't afford meds?
I no longer have insurance, and barely afford medication that doesn't really do much for me anyway, but I think about all of the people, with and without insurance, that cannot afford medication that they need for an illness.
I just read a really crazy story about a young lady that is trying to afford Provigil for her diagnosed Narcolepsy, and it is just crazy what Cephalon, the makers of Provigil suggested that she do.
Just read the story for yourself. Click here to read her story. What do you all think about it? What is your situation? Any feedback?
When your health is getting worse, and nothing that you try works?
Narcolepsy is so tricky, and I guess just like everything else, what works for one person, may not work for another. Anyone out there with Narcolepsy, have any advice? I have taken Dexedrine for about 5 years now, with no increase in dosage. I worked full time, up until approx. one and a half year ago. First I went down to part time, then I was let go. I got the award for employee of the year! How could they just let me go??? Even after all of this time, it is like it happened yesterday. I guess my job was my life. It was the only stable thing I had.
I am sorry if this a a depressing post. I just am letting it out...the cats out of the bag. I am not the "together" person that most think I am, and I am at a loss when it comes to what to do. I lost my job, my apartment, my car. I work part time now.
I know I am blessed. I just am getting to the point where I cannot imagine living like this for the rest of my life. I don't want to die, I just don't want to live like this. I have been independent for most of my adult life. I think when one loses this independence, it can truly wreak havoc on your self worth, or your perceptions of yourself. I want to be a active part, a useful positive part of this world again.
I know God knows what is going on, I just can't figure out what he wants me to do...
Nearly 130 gather to raise support for new law that would require monitors on school vehicles.
Click here to read the update on the story of the courageous Ms. Bernadine Wade, and her struggle to get the laws changed to protect our children! Ms. Wade, you and your family are in my prayers, and thank you so much for what you are doing!
Also, to keep up to date on her family's story, and what this is all about, click here to go to the family's website. This is an issue that we all can help and do something about. Please, check it out.
Seven Year Old Girl Sexually Assaulted on a School Van in Ohio Leads Family and Activists to Join Together to Change Law North Canton, Ohio – March 11, 2008 – On Friday, April 11th, activists, parents, child advocacy groups, disability rights organizations, media personalities, clergy, community leaders, lawyers and others will convene in Ohio.
I will tell you, watching television this week, I thought that it was my Narcolepsy or Deja Vu, or something wrong with my head. I could still turn on the tube right now, and they would be yapping about "Obama's speech about Race". Didn't that happen at the beginning of the week??? I mean, the speech was phenomenal, but it is as if he gave it today, they are still analyzing each sentence, each phrase.
I thought I must be dreaming, but I guess I wasn't. It should be remembered, but how long are we gonna listen to these soundbites of it, and listen to each news personality give their opinions about what the frack he means...
Oh yeah, and what a great opportunity to invite all minority jounalists to the show to give their opinions too. I guess they only have opinions regarding things of a racial matter. Well, at least they are getting some airtime now, too bad it is only because of the current "race" commentary. How racialicious!
Anywho, I think if I hear another person say how "articulate" Obama is, I am going to puke from the mere ignorance of someone actually thinking that saying that someone is "articulate" is a compliment.
1.uttered clearly in distinct syllables. 2.capable of speech; not speechless. 3.using language easily and fluently; having facility with words: an articulate speaker.
Hmm... You are so capable of speech! You uttered your syllables so distinctly. You are so fluent in the English language! Yeah...what a compliment. Give me a break. Oh yes, and Obama is "clean" or "clean-cut" too. As if we would expect a presidential candidate to be scraggly and smell like a bag of onions?
And please, can we just move along with the campaign? If the worst thing that we can find on Obama is that his Pastor says unfavorable things to some people about racial topics, wow...this guy must be pretty clean. Is that the best you can do???
P.S. I don't know who I am voting for yet.
P.S.S. Here are some other interesting conversations, articles, about this subject: Oh and this video is beyond funny...
You know, If you have read any of this blog, it is apparent that I have Narcolepsy. So many people have said things to me like, "oh yeah, my cousin had that, and his doctor gave him a cure". Ok, no big deal. Sometimes, we, including myself, don't know what the heck we are talking about. When someone said the above to me, I said to them "no, there is no cure for Narcolepsy, maybe it was something else". I said this, trying to be nice, polite, whatever. They replied, "no, it was Narcolepsy, you should go get cured".
Stupid. People say things all of the time, without looking into what they are saying. Just like the deal with Barack Obama. I keep seeing people claiming that this man is a Muslim. I think to myself...So what if he is. But the fact is HE IS NOT...and no, the title of this entry is not true either. Barack Obama has said repeatedly that he is a Christian. All facts and historical information lead one to clearly see that he is telling the truth. But I wonder how many people just believe something, just because someone said that it was so.
This goes way beyond our news headlines or the presidential races. Think about your every day life. Do you believe something about someone, or anything just because someone says it is true? If you hear something that might make an impact on your life, or others' lives, do you check it out, or just go on spreading the information, not knowing if it is a fact, or not?
Read.Read more. If you are not sure, or it is a matter that is different depending on opinions, investigate, form your own opinion. Don't just rely on someone else's statement without being informed. Duh. And if you were wrong, just admit it. I don't know about you, but I think that a person that can admit that they are wrong without getting all bent out of shape about it, is a person of strong character. When I hear someone saying that "oops" they were wrong, sorry about that, etc. I trust them even more, and feel that that are a person that I can trust a little more.
So, here it goes... Elvis does not currently work at a Burger King in Michigan. Bill Gates will not send you money if you forward an email to ten people. and no...that pill will not make you lose weight while you sleep...believe me, I've tried.
It is now 4:03am. I am so awake. I just worked my bootie off, well, nope, it is still there, but really, I worked super hard, and I am mentally more alert than a...hmmm...look, I am just reallly awake.
Narcolepsy is funny like that. I think a lot of people just think that Narcolepsy makes people sleepy all of the time, and they can never stay awake. But I am here to tell you, that ain't so. Can anybody relate?
Well, I hope you all, who are reading this will have a great weekend.
I have always loved Dick Gregory; his analogies, his words of wisdom, his unmatchable charisma! I encourage you to visit his website. Click Here to check it out.
Dick Gregory is truly a man of wisdom, and he teaches and shares his wisdom with such a humor and straightforward approach. When I hear him speak, I find myself laughing at his cleverness, and then crying because of his sincere truthfulness.
Dick Gregory once said, “Once we used to have to crank up our cars, now you can pop it on from inside your house. Everything has changed except how we get freedom.”
Today, I just wanted to thank God for Dick Gregory, and thank you Mr. Gregory, for sharing your light and love so generously!